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I feel same way i had thgt the adavan was the meds my moms live in bf and my sister say this dr prescribed by its xana x she as well seems to be asleep with it especially when he wsntd to so call run to store or run to eat etc..
Just to update. Called Hospice on Sun but there was no one in the office.first thing Monday morning I called and said I wanted to take my Mom home. They spent 45 min talking me out of it, saying they would keep the problem nurse at the SNF away from her, etc., etc. Promised there would be no more Xanax, etc. I gave in, mostly because I just couldn't take it anymore. If I can't, how do you suppose my Mom feels?? By Mon afternoon Mom was calmer without the hallucinations from the Xanax. She was quiet, not yelling out and crying. What a relief! However, she was past the point of truly communicating now so it's hard to know if she's in pain or anything. Ten days of hell on the Xanax with the nurses determined to shove it down her throat, she hadn't been able to eat or function at all. She lost so much weight and went through so much that dying now would be such a relief. But she wasn't ready I guess. This whole thing has been such a nightmare. 'Our' Hospice nurse has seen my mom a total of twice, once to get her to sign up. I'm so glad that there are people who have found help and care and comfort from Hospice, but it's not the case in every situation. I understand that the family can be hard to manage when the process of dying isn't understood, but sometimes, just ONCE in awhile, it would be good to LISTEN to their concerns
Stressed, There are also many other pain relievers (narcotics) besides Morphine. You could try Fentanyl, Demerol, Paragoric (opium), OxyContin, Dilaudid, Methadone, etc. Shouldn't be any reason the nurse can't find anything but Morphine and Xanax.
Stressed123, In looking through my very old (1995!) nurses' drug handbook, there are many other anxiolytics to choose from; Librium, Valium, Ativan, meprobamate, Serax, Tranxene, Buspar and the newer ones, Cymbalta, Klonapin and Lexapro.
Thank you SueC1957, also. She hasn't had any pain up to this point but that may have changed in the last four days, so now that she is conscious again we can find out. I don't know how else to communicate to the nurses and other people that I feel medications are a GOOD thing, just not if you happen to have a bad reaction. Xanax and the elderly is a pretty common subject on the internet so why is this such a battle?? Is it possible that the hospice nurse really has no arsenal? She keeps saying she has calls in to pharmacists to find something other than Xanax. I just don't get it.
Thank you so much for answering Veronica. I desperately want my Mom to pass but it's not happening. Today the good nurse was on and Mom was peaceful and comfortable. They used Lasix to decrease her fluid and she said she had talked to Hospice and had withheld using the Xanax per their recommendation, although she told me that the order was still on the books. She asked the next shift not to use it because Mom was finally peaceful. The nurse that insists on using it is now hostile. I sat with Mom and watched her finally able to open her eyes, communicate and drink water. It has now become like a stand off. I'm sure the nurse is angry at all this. She sat mutely and watched as Mom became lucid and comfortable. This is a wonderful place other than that nurse who seems to intimidate everyone else. When the office opens tomorrow I'm going in to take mom home to die as the SNF seems to have become a battleground and I am no longer comfortable with her being there. I just hope I can get some kind of answer about different meds so she can actually be comfortable and not hallucinating. The Hospice nurse seemed to not know of anything other than Xanax and Morphine, maybe she is new? Idk, but she at least asked them to stop the Xanax.
Dear Stressed, there are antipsychotic medications but they tend to turn a person into a "zombie". Haldol and Respidol are 2 of them. Very powerful drugs. I'm not sure you would like the effects on your mom since you didn't like the effects of Xanax. I agree with Vero, everything she suggested is right on. It can be very difficult to watch the different stages of passing. Each person has their own way of leaving this world but most tend to get very anxious and benefit from some sort of calming medication. Does it seem that your mom has any pain? Maybe they could use pain meds to calm her instead of benzodiazepines. There are many to choose from. You have a few choices; 1. Move her to a different hospice (farther from your home). 2. Have her admitted to the hospital (that cancels hospice services). 3. "Find" some money (sell or pawn items, take a loan, etc.) to bring her home and hire home health aids for 2 shifts. 4. Demand (yes, demand) a meeting with a the hospice director, her nurses and her private doctor with you. Have ready the exact way you want her medicated. If they can't do it, send her to another facility. It's disturbing that both her private MD and the anonymous worker in the hospice made reference to "fishy" happenings and "controlling" patients with nurse Ratchet
How about sitting with your mom for 24 hours, noting everything given, at what time and all behaviors and what time? This would give everyone, you, the dr. Etc. A visual record. Sometimes that brings clarity to situations.
Stressed you can call hospice anytime day or night, there is always a RN on call. You can request an immediate visit and he/she can contact a Dr and get the orders changed. There are many pain meds available and can be immediately changed, same does for the anxieolitics. This is not to say that what ever is done will change your Mom's condition but at least you will have done your best. You can certainly have her taken to the hospital but that does not guarantee a different outcome. I think you sound as though you are at least halfway to accepting that your beloved Mom is close to the end. Let her rest in peace for her final days. Waking her up at this point will only increase her suffering. Experienced caregivers know that this scenario is common at the end of life and these changes do occur very suddenly. Many caregivers beg for the nurses to give their loved ones enough medication to just allow them to sleep till they pass. You have been challenged by the way Mom's end of life is playing out.. I can not say you are wrong and she may simply have reacted negatively to the medications used and the temptation is always to increase the dose. When a patient is in a facility the staff there assume responsibility for the majority of that patient's care so it is not unusual for hospice nurses to only visit a few times a week. however as I mentioned you can request a visit at anytime this is just as important for the support you badly need as for your loved one. The lines of responsibility get very blurred when a hospice patient is in a facility which is not run by hospice. The staff are not specifically trained in hospice care so they can only apply basic nursing standards. Stressed your reactions are not wrong, your Mom's care may have been mismanaged due to many reasons and you are rightly upset by what you are seeing. Everyone would like to see their loved one pass away peacefully in their sleep. Unfortunately this rarely happens which may or may not be anyone's fault. Was the nurse over aggressive with her use of the medication? No one has the answer to that although some people held that opinion but from experience I can tell you that patients often require huge doses of drugs in their last few days and are very grateful that the nurses are not afraid to use the doses the Dr has ordered and never hesitate to request an increase. Try and find peace with the last few days of your mothers' life. Blessings
Thanks. Yes, the Hospice nurse mentioned that there was a very 'controversial' anti psychotic that is used sometimes but wasn't sure it was right. I feel that they would be treating the symptoms of a drug reaction rather than the person, which makes no sense. Veronica, are you there? Aren't there sedatives and/or pain meds that work on people who have issues with paradoxyl disinhibition and benzo related hallucinations and need something different?
The other thing that occurs to me is that you can cancel Hospice and ask that she be admitted to the hospital (they're in the same building, yes?). Just thinking out loud here.
Her Dr only works 3 days a week and hasn't seen this. At a Care Conference that included all the directors but none of the nurses the head Dr of the facility explained what was wrong and turned it over to the Hospice person, who hasn't seen Mom, and she said she would look for different drugs and I haven't heard back, nor was any of this info relayed to the nurses. I'm putting a call into that head Dr today (it's Sun and I don't think anyone is working) then the Hospice, and then I don't know what. I would just go get my Mom but that might not be good if she's hallucinating :-/
Years ago, i had a friend who was dying of breast cancer. She became allergic to the morphine they were giving her and had to be weaned off it before they could give her a different pain med. It was excruciating to watch ( I was told by her family).
Death is not always peaceful, or painless. I'm so very sorry that your mom and you are going through this.
Thanks Veronica, I appreciate the support. I am ready for Mom to pass although you may have been right about the feeling robbed part. That's over now tho. Now I just want her to experience SOME kind of peace or relaxation. She's rigid as can be and miserable. Never actually sleeps, just in a twilight of misery. There HAS to be other medications to calm and/or relieve pain that don't do this!
This is what I've learned. She is experiencing paradoxal disinhibition (yelling, moaning, crying, like a drunk) and what they call Pseudodementia (memory loss, hallucinations) from the Xanax they're giving her to calm her. So they give her MORE to knock her out. When she starts to come to she's moaning and calling out and crying and they keep giving it to her. Saying she's calling for loved ones. The head Dr knows this but for some reason isn't conveying the orders to the nurses. This is a nightmare to watch. She hasn't eaten for 3 days and now isn't drinking and they're trying to say it's the body shutting down but it's NOT. I am not in denial, trust me. When the drugs wear off enough she's starved and lucid. I want to take her out of there but I know I can't do this alone at home, I can't physically get her to the toilet or bathe her. Not enough money for all day nurse, and Hospice says they only come 2 maybe 3 times a week. She went from a happy person to an unconscious demented lunatic overnight. I'm worn out tonight, but tomorrow I HAVE to find a way to deal with the hallucinations until I can find someone who knows of a different drug she can take to help with anxiety from pressure on chest and future onset of pain. Morphine did the same to her as the Xanax :(
stressed, not eating is a natural end sign. I think she is very close to leaving now. When my daughter got to this point, I got some anxiolytics for ME. There's no shame in getting meds for yourself.
Stressed I know this won't be helpful at this terrible time but 3 days without food will not make someone a skeleton, it takes many weeks for that to happen. I can't comment on whether the nurse is being heavy handed with the drugs or simply easing your mother's passage from this world to the next. As Vstefens says the nurse can only administer the drugs as ordered. Watching a loved one get to this state is very very hard to accept under any circumstances and with your current feelings even more difficult. They certainly can reduce the amount of medication and your mother may or may to wake up and you may not be happy with her condition if she has actually entered the dying stage which nothing can reverse. To others always question what is being done/given to our loved one whether you have personally seen it or not, There is often another explanation than the one you have been led to believe. Stressed you are probably feeling angry and afraid right now because you feel you are being robbed of this final time with your mother and feel there are still things to communicate. Try and just sit with her , hold her hand and tak quietly to her, let her know it is alright for her to pass if the time is right. If you are spiritually inclined read the bible to her or just talk of ordinary things. the last thing she needs right now is to hear the anger and frustration in your voice. If this is allowed light a candle by her bed with a calming scent such as lavender or her favorite or sprinkle a little on her sheets or just wear it your self. Music often helps too. Lastly do not accept the overmedication if you truly believe that is happening. Doses can always be reduced, but you may find the agitation is part of the dying process and the only answer is sedation. If you are Mom's POA you have the right to refuse medication on her behalf. Severe agitation is very common close to death and you can either let it continue or use sedation. As far as feeding is concerned, it can be tried a small soon at a time but be prepared for her to choke on it. Ice chips to keep her mouth moist may be helpful. I am so sorry you are experiencing what you see as mismanagement in the turmoil of your grief but be comforted that your mother is not suffering.
Thanks guys. After seeing her tonight I think it's pointless. They've kept her sedated for three days so she's had no nourishment. The Dr said she was reacting opposite from the Xanax, like a loud drunk, so they would find something else. In the meantime the nurse on duty would just give her more and knock her out. I tried to catch my mom awake at the end of that nurses shift but she is so high she can't focus, can't wake up enough to be coherent, and she's too drowsy to eat. She's like a skeleton now after days of this. I've given up, she's too far gone to come back I think. I believe there's nothing to do now except keep overmedicating till she passes. This whole thing has made me sick to my stomach. This was not part of her illness. That I could accept. This was 'patient management'.
stressed, she is going to sleep more and more. You can ask the MD for a blood draw to check medication levels, but sleepiness is not necessarily overmedicating. It can very well be the body shutting down.
Oh, and these are the SNF nurses, as Hospice seems to be just a word and a traveling director who comes to meetings but doesn't actually do any caregiving
Thanks. This is what's bothering me, I already specified (as did her Dr) that she not be given the meds unless really distressed AND I was called first, because I live two blocks away and would like to try calming anything first. When I first felt this way her Dr mentioned that I say something to her (the Dr) if I thought something was fishy. I didn't because I hadn't actually SEEN anything. Now I feel that I have, but I'm worried that I'll be leaving my Mother in the care of a hostile nurse if I report this. (This nurse is the one who has trained the nurse I thought was overzealous by the way) An aide there mentioned that this nurse likes to keep her patients 'managed, not comfortable' but this was said in confidence. I feel like I just signed up for a season of Survivor, with all the alliances and secrets.
Ok. The nurse and/or prescriber apparently want your mom in the twilight zone and you don't. Request a meeting about her meds and her goals. People metabolize meds differently and maybe something she is taking is accumulating and keeping her out of it. I just had a second case of slow metabolism of clonidine iwth prolonged sedation, FWIW, with one of my outpatient. You might need to order changed or the dose changed, or to have it specified that the "PRN" is only for severe distress, or even that you want called to talk to her first to see if you can calm her first.
I say apparently because the next two questions are harder - is it possible she is in pain or distress if she is less sedated? is it possible she is out of it because of her undelying medical condition? They should be able to answer that for you.
The Xanax says, As Needed, 1/2 tablet 2X a day I haven't been able to talk to my Mom for 2 days because she's unconscious every time I go there to visit. (3 x a day) Today I arrived and she was on her bed pretty out of it, eyes closed, but still conscious. At the same time I got to the room the nurse came in with a spoonful of chocolate pudding in a medicine cup. I asked what that was for and she leaned over Mom and said open up and put it in her mouth before answering me. She said she 'chewed and spit the other out'. If that was the case why was my Mom already drugged from the one she 'spit out'? I've been told that nurse is heavy handed with the meds but I don't repeat something unless I've seen it myself.
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APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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You could try Fentanyl, Demerol, Paragoric (opium), OxyContin, Dilaudid, Methadone, etc.
Shouldn't be any reason the nurse can't find anything but Morphine and Xanax.
I agree with Vero, everything she suggested is right on. It can be very difficult to watch the different stages of passing. Each person has their own way of leaving this world but most tend to get very anxious and benefit from some sort of calming medication. Does it seem that your mom has any pain? Maybe they could use pain meds to calm her instead of benzodiazepines. There are many to choose from.
You have a few choices;
1. Move her to a different hospice (farther from your home).
2. Have her admitted to the hospital (that cancels hospice services).
3. "Find" some money (sell or pawn items, take a loan, etc.) to bring her home and hire home health aids for 2 shifts.
4. Demand (yes, demand) a meeting with a the hospice director, her nurses and her private doctor with you. Have ready the exact way you want her medicated. If they can't do it, send her to another facility.
It's disturbing that both her private MD and the anonymous worker in the hospice made reference to "fishy" happenings and "controlling" patients with nurse Ratchet
When a patient is in a facility the staff there assume responsibility for the majority of that patient's care so it is not unusual for hospice nurses to only visit a few times a week. however as I mentioned you can request a visit at anytime this is just as important for the support you badly need as for your loved one. The lines of responsibility get very blurred when a hospice patient is in a facility which is not run by hospice. The staff are not specifically trained in hospice care so they can only apply basic nursing standards.
Stressed your reactions are not wrong, your Mom's care may have been mismanaged due to many reasons and you are rightly upset by what you are seeing. Everyone would like to see their loved one pass away peacefully in their sleep. Unfortunately this rarely happens which may or may not be anyone's fault.
Was the nurse over aggressive with her use of the medication? No one has the answer to that although some people held that opinion but from experience I can tell you that patients often require huge doses of drugs in their last few days and are very grateful that the nurses are not afraid to use the doses the Dr has ordered and never hesitate to request an increase.
Try and find peace with the last few days of your mothers' life. Blessings
Veronica, are you there? Aren't there sedatives and/or pain meds that work on people who have issues with paradoxyl disinhibition and benzo related hallucinations and need something different?
Again, I'm so sorry that you and your mom are going through this. Has anyone suggested an anti psychotic?
Years ago, i had a friend who was dying of breast cancer. She became allergic to the morphine they were giving her and had to be weaned off it before they could give her a different pain med. It was excruciating to watch ( I was told by her family).
Death is not always peaceful, or painless. I'm so very sorry that your mom and you are going through this.
I can't comment on whether the nurse is being heavy handed with the drugs or simply easing your mother's passage from this world to the next.
As Vstefens says the nurse can only administer the drugs as ordered.
Watching a loved one get to this state is very very hard to accept under any circumstances and with your current feelings even more difficult. They certainly can reduce the amount of medication and your mother may or may to wake up and you may not be happy with her condition if she has actually entered the dying stage which nothing can reverse.
To others always question what is being done/given to our loved one whether you have personally seen it or not, There is often another explanation than the one you have been led to believe.
Stressed you are probably feeling angry and afraid right now because you feel you are being robbed of this final time with your mother and feel there are still things to communicate.
Try and just sit with her , hold her hand and tak quietly to her, let her know it is alright for her to pass if the time is right. If you are spiritually inclined read the bible to her or just talk of ordinary things. the last thing she needs right now is to hear the anger and frustration in your voice. If this is allowed light a candle by her bed with a calming scent such as lavender or her favorite or sprinkle a little on her sheets or just wear it your self. Music often helps too.
Lastly do not accept the overmedication if you truly believe that is happening. Doses can always be reduced, but you may find the agitation is part of the dying process and the only answer is sedation. If you are Mom's POA you have the right to refuse medication on her behalf.
Severe agitation is very common close to death and you can either let it continue or use sedation.
As far as feeding is concerned, it can be tried a small soon at a time but be prepared for her to choke on it. Ice chips to keep her mouth moist may be helpful.
I am so sorry you are experiencing what you see as mismanagement in the turmoil of your grief but be comforted that your mother is not suffering.
Yes, her body may be ahutting down. But talk to the doctor.
Now I feel that I have, but I'm worried that I'll be leaving my Mother in the care of a hostile nurse if I report this. (This nurse is the one who has trained the nurse I thought was overzealous by the way) An aide there mentioned that this nurse likes to keep her patients 'managed, not comfortable' but this was said in confidence.
I feel like I just signed up for a season of Survivor, with all the alliances and secrets.
I say apparently because the next two questions are harder - is it possible she is in pain or distress if she is less sedated? is it possible she is out of it because of her undelying medical condition? They should be able to answer that for you.
I believe I would, at this point, think of asking for another Hospice provider. these folks don't appear to be addressing your concerns.
I haven't been able to talk to my Mom for 2 days because she's unconscious every time I go there to visit. (3 x a day) Today I arrived and she was on her bed pretty out of it, eyes closed, but still conscious. At the same time I got to the room the nurse came in with a spoonful of chocolate pudding in a medicine cup. I asked what that was for and she leaned over Mom and said open up and put it in her mouth before answering me. She said she 'chewed and spit the other out'. If that was the case why was my Mom already drugged from the one she 'spit out'?
I've been told that nurse is heavy handed with the meds but I don't repeat something unless I've seen it myself.